Optic Neuritis pain

[Nickie72]

Whoever has experienced ON, is there anything I can do to minimize this pain? I'm already taking 2 percocet every 3-4 hours, but it's not cutting it today, and I can't stop crying, which of course is making the pain worse. My MS Specialist wont even call me back, and neither will his assistant. I don't understand this and keep asking myself why..why is this happening to me. If I was a doctor, I would never let someone suffer like this. Never.

I was thinking of an ice pack, but want to make sure it won't hurt me. The images are horrific looking, and that's the reason I ask. On many of the images, it looks as though my eye has been eaten away and if I put any pressure on it, it'll make the condition worse, I dont know. I am scared, and the depression is sky rocketing!

I don't wanna sound so pitiful. I wanna be strong for my children, even though they're teens and can do almost everything for themselves, I wanna be able to clean the bathroom, and do the dishes once in a while, and most importantly, I wanna cook dinner every night instead of having TV dinners.  I dont even feel like a woman or a mother anymore.

I'm still not diagnosed with MS, even with confirmed ON though an MRI, as well as lesions on the brain (one active). I feel as though I've been cursed, and I'm going to go ignored until there's a new lesion or multiple ones, and I can no longer feel my legs. Heck, maybe that'll go ignored to. With my luck, it would be. I need to get angry again!

Thanks for listening to my rant. Much love to all, as always!

[amers789]

All I can say to all of you suffering, I wish for once the ones who won't treat us, diagnose us, or believe us or give us hope for an answer would have to walk in  our shoes for just a little while and let's see how that would change how they respond.

I am sorry for each of you suffering so much pain, a good pain specialist can help but at this point for you Nickie another ER visit and take someone who can advocate and feels comfortable confronting those docdtors who won't commit. My goodness, IV steroids is a big help and not many side effects can't believe they won't even give that.

I am in one of those moods where I have very little respect for the "weenie doctors..."

Get well, praying for each of you.

Amers

[deb52613]

Hi, my 14 year old son has had eye pain, vision loss, severe sensitivity to light in his right eye for about 10 weeks now.  No problems before now.  His vision got dark, blurry and double.  The pain is so severe and it hurt with movement as well.  He has to cover his eye to be in any kind of light because is hurts so bad and causes a headache on top of the eye pain.  We have been to four doctors including pcp, neurologist and pediatric neuro opthamalogist.  He has had so many tests from spinal tap, vision tests and blood tests. His MRI showed two leisions and some vision tests showed abnormal results.  Even with all this going on, I can not get a doctor to diagnose his with whats wrong other than demylination, vision disturbance and fatigue.  He also has severe fatigue if he does too much, gets too hot or even takes a shower.  He has to lay down and rest.  Some days he can't even get up for very long because of the fatigue.  Does anyone have any thoughts on this.  We are desparate for someone to help him.  One neurologist suggested optic neuritis but didn't want to give him Solumedrol IV but wanted another dr to make that evaluation other than him.  He is getting to the point he can't take it anymore.  Any thoughts/suggestions would be greatly appreciated.  Thank you, Deb.

[PastorDan]

I'd also suggest reading the Health Page regarding the treatment of neuropathic pain.  Shucks, print it and take it with you to the ER; what';s the matter with these people, anyway?  Do they like to see us suffer?  Sorry....  Rant away; I'm right there with ya tonight.  Forgive any trpos; I've porrfed this 4x already.

[rothexl]

So sorry to hear you are in such pain. It really does sound like an emergency, I would definitely keep trying to reach my neurologist and ask for steroid treatment.

What I still didn't get, what you described about your MRI images- did you mean the actual orbs of your eyes? Quix better say something about this, I'm not a doc, but as far as I'm aware of it, ON affects the optical nerve, so any damage would be visible in the area directly behind your orbs where the optic nerve leaves from the retina and then along the optic nerve strands through the brain, so I'm not sure whether what you saw on your images is actually anything bad after all. -not that MRI images don't look totally spooky, of course, especially in the eye region..!

I hope you will reach your doctor soon and most of all, feel better soon!

[Nickie72]

The images: the MRI of my orbits. My left eye looks like a broken door knob. (just one example of one image that disgusted me)

I've already been to the ER and the nurse put in an IV for the steroids, then the doctor changed his mind and sent me home after calling a local neurologist to ask for a 2nd opinion. I told him I wasn't seeing any doctor because I saw no sense it in due to each and every one putting me off, anyway.

I saw an Ophthalmologist yesterday because I now have it in my right eye as well, and my pupils are HUGE. She saw nothing abnormal except for my pupils, and had me to the visual acuity test which I passed, although I missed several spots, which she thought were normal for any person. I'm heading back to see her next Tuesday to get pictures taken of my optic nerves.

[Quixotic1]

Nickie, I don't understand what you mean by "the images".

The only thing other than heavy duty meds that I know of to relieve this kind of ocular pain is the steroids.  They are the best at relieving the acute pain, but don't change anything about how well the bout heals or whether there is lasting damage.

Call your neuro's front desk or message service if it is after hours, and ask who is on call.  Then call that person.  If necessary go to the ER.  Severe Eye pain is an emergency.

[mitchlee1]

I have MS and bilateral optic neuritis.  I am blind in the left and legally blind in the right eye.  I was having sever migraine headaches with stabbing pain in my left eye that was very severe.  I had to go to a pain doctor.  Here are the meds that I am on now that finally go me pain free. Neurotin 800mg tid, Baclofen 10mg qid, Percocet 10mg five per day, Duragesic patch 75mcg/hr, Klonopin 1mg qid, a Baby aspin a day for my heart but I am sure it helps with pain also.  finally, sometimes I put an eyepatch on and go somewhere where it is totally quiet.  all of this is necessary to become pain free.  I am a RN and before being diagnosed with MS took no medications, However, pain medications were developed to get a patient out of pain. I do not understand why so many clinicians are willing to let their patients suffer.  They took an oath to help prevent their patients suffering. Why so many are unwilling to do their job and give the medications is beyond me. Those physician's should have their licenses revoked.

[Deb61]

I am sorry to hear about you having so much pain.  I can relate about the pain.  The only thing my doctor suggested for the pain was Ibuprofen which didn't do much; however, the pain I experienced was more of a dull ache.  

In regards to getting in touch with someone at the doctor's office, you may need to find a name of someone to get in contact with when things like this come up.  I call the desk and ask to speak with the name of a  particular nurse.  She is never available at that moment, but she always gets back with me within a couple of hours if she's working.  Otherwise, my message tends to get lost and I have no idea who is responsible because it's such a busy office.